Additional resources

General resources on rare diseases

The Rare Diseases Platform brings together organizations (patient and health professional), individual employees and volunteers in the private and public sectors, and stakeholders, dedicated to the field of rare diseases.

The Rare Disease Alliance offers a list of member associations active in this therapeutic area

For more information, you can consult:

The portal for rare diseases and orphan drugs and, in particular, the Encyclopaedia for the General Public

Rare disease education videos from the Foundation for Rare Diseases

At the European level: The EURORDIS Alliance website – Rare Diseases Europe

Disease-specific resources

  • Systemic sclerosis:
  • Systemic lupus:
  • Multiple sclerosis